Families Fighting Histiocytosis About Logan

02/08/10

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"Your child has a tumor on the side of his skull that has entered the brain cavity."

We received this news regarding our 2 year old son on 4/20/05. It was an agonizing 9 days later before we knew the extent of the disease, and could put a solid name with it: Langerhans Cell Histiocytosis (LCH). An extremely rare disease (1 child in every 200,000 born, usually children, so maybe 1,400 cases in the whole U.S.), LCH can be deadly or cause life-long disabilities. Kids are treated with chemotherapy, and have a 50% chance of recurrence even if they're successful in forcing the disease into remission. Of those that survive, 20-40% have later Central Nervous System complications which may include learning disabilities, diabetes insipidus, problems swallowing, and issues I'd rather not think about. Since the disease is so rare, it receives no government funding for research.

Our boy, now 4 years old, is a trooper. He has been through at least 5 surgeries, 6 CT scans, 2 bone scans, 7 MRI's, 44 chemotherapy treatments, and 54+ blood tests. Through it all, he never complains. Aside from the port in his chest and a little hair loss, you can't tell he's fighting for his life by looking at him.

Logan took IV chemotherapy from 4/05-4/06. His latest MRI on 4/13/07 showed the tumor gone and his skull bone healing. He completed a year-long oral maintenance chemotherapy in April of 2007, and had the port removed from his chest. Even though Logan has conquered this tumor, he will have a life filled with follow-up and constant vigilance to catch any recurrence or late effects (side effects) early.

Thanks for helping Logan and all the other children in their battle with Histiocytosis.

 Click here to learn more about Logan's battle with LCH.

 

Send me email at: DonJohnson@NotTheActor.com

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